At birth, doctors suggested I would be mentally disabled, in addition to the physical injuries I suffered. I have never been described as normal. “High-functioning autism” (HFA) is just another way to describe a few aspects of “me.” The autistic me is the creative me, the curious me, the complete me.

Tuesday, May 24, 2011

Children with Special Needs Become Adults

Last night I spoke to a group of educators, support specialists, and parents of teens with autism spectrum disorders. One of the key points during the conversation was that children with special needs grow up and become adults with special needs. Unfortunately, it is easier to raise awareness of children via the media than it is adults. A child with special needs is a great "feature story" on the local news. A child is also great for fundraising posters and images on websites.

Adults with disabilities remind other adults that life is unpredictable, even cruelly absurd. Many disabilities appear as adulthood begins. Schizophrenia is one mental health condition that often appears after the age of 18, for example. Physical challenges, such as multiple sclerosis and Parkinson's also appear in adulthood. Disabled adults are a reminder that no one is impervious to life's risks. Life itself is always terminal.

Children with autism now receive more supports than ever before, but many autistic adults feel invisible. Autistic adults face high unemployment (only 17 percent find appropriate employment, according to a U.K. study), social isolation, and, often, a number of potential coexisting conditions. Many of the autistic adults I've met also deal with seizure disorders, social anxiety, sensory integration issues, and learning challenges.

Because autism can affect social skills and executive functions, adults with ASDs often fail to seek the services and medical care they desperately need. Adults with special needs often need minor, but essential, guidance to obtain services and supports. Organizations serving adults have difficulty explaining these unique needs.

Raising money to fund adult services is not easy. A few parents have told me, bluntly (and wrongly), that it is "too late" to help many adults with special needs. I refuse to believe that. Plus, these parents need to consider the likelihood that their sons and daughters are not going to be "cured" magically before adulthood. A child with special needs is going to be an adult with at least some unique needs.

Thankfully, most parents do realize they need to plan for their child's future. Parents of adults with disabilities are emerging as vocal advocates for the disabled, paving the way for those with young children and teens. Only a few decades ago, autistic adults, those with Down syndrome, and many others were "hidden away" in "care facilities" that offered anything but care.

If you are interested in supporting adults and their efforts to become fully integrated members of our communities, please consider The Arc Foundation or its regional chapters:

7 comments:

I'm confused. First you reference that you spoke to parents of teens with autism in the beginning and then you write towards the end "these parents need to consider the likelihood that their sons and daughters are not going to be "cured" magically before adulthood. "

Did you in all honesty meet parents of teenage autistic children that believed their children would be cured in a couple of years? I find that hard to believe. After everything, all those years of battle scars of dealing with the medical profession, schools and so forth they still hold hope of a cure before adulthood? If this is true, you've met some truly rare "creatures".

Thanks for your post. Many of the (adult) folks I serve at the developmental center where I work were once children on the autism spectrum (most arriving there as children who did not have services in the community back in the late 60s and early 70s). They still live in the institution and they still have autism, and it's often really difficult to get them out. A lot of times it's because families have gotten used to the "safety" of such a restrictive setting. Sigh.

I absolutely agree with you- learning doesn't stop as an adult for any of us, and all people learn through the relationships they develop. Services need to be lifelong.

Yes, I meet parents of teens and even young adults still searching for cures for various disabilities. I'm not sure why that is surprising. These are not rare "creatures" -- they are parents told by groups (insert various names here) that autism is "caused" and there must a be corresponding "cure." I explain my views, but parents don't want to hear that neurology isn't going to be rewired.

The number of parents attending AutismOne is evidence of that. Normally, I wouldn't promote the link, but it is interesting to read the conference topics:

One of the experts organizing the event last night talked to my wife and I about parents of adults still "infantalizing" (?) their disabled children. Apparently, there are even parents of some disabled children who intentionally use medications to stop physical maturation.

I've met parents of 20-year-old students, since I work mainly with university students, asking what can be done to "cure" autism. My guess? More common a wish than I could estimate.

Parents read these stories and want to share in the hope autism is something to be "recovered from" like a cold. For many children, even with intensive early therapies, there are limits. Autism doesn't go away, though some of us learn to adapt.

I checked out your link and found perhaps 1 article out of a handful that discussed teens with a "cure" bent to it. Most of the articles had to deal with similar issues you write about and two of the search results were articles written by HF autistic adults.

I don't think you understand the view of parents. They don't see the distinction between "cures" promoted at AutismOne for children and "cures" for teens or adults. To these parents, a cure is a cure is a cure and the promise of ending autism is all that matters to them.

When I speak to groups, I generally get one question and usually many more about "cures" (as opposed to "treatments" I suppose?) for autism. Since I only speak at secondary and post-secondary education conferences, one might imagine "cure" is no longer the focus of parents, but it is. Even when they cite stories that are explicitly about very young children and early intervention, these parents want to know why these "cures" aren't offered at the college level.

AutismOne is associated with Generation Rescue, I believe. The other group once involved was Cure Autism Now! Parents still wear the buttons to school conferences. I'm not sure how to respond to those parents, since I only deal with accommodating students and providing some supports. I definitely don't offer a cure.

To clarify -- it is a minority of parents, but a vocal (very vocal) "cure" movement. Often these parents are also involved in vaccine "choice" movements, too. They have a long, long list of potential villains behind the "autism epidemic" and as a researcher at a university I am sometimes accused of being part of the government / corporate conspiracy.

AutismOne gives a platform to pseudo-science, at best, and fraud at worst.

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